First letterbox , shock

[unflappybelivabubble]

Our AD came to us at 12months . Now 12 years old and very loved by us but she struggles socially and finds it hard to make or keep friends . She does lots of extra clubs but says nobody likes her. She is very academic and creative with lots of energy so the clubs which are physical and creative suit her . I was also hoping that she find friends but it hadn’t happened. She is an obsessive eater too . Always saying she’s hungry . We try to feed healthy meals but if we give her a pound she’ll spend it on a packet of biscuits .
I always felt she may be on the spectrum but coping , now I don’t think she is coping .
last week we got a first letterbox from bm . It had an addition letter for us telling us she had been diagnosed with a chromosome depletion causing autism and overeating which has me thinking .
we will get our Dd tested as there are other medical implications we will need to know .
Our dd doesn’t know this but she is really upset about school and friendships and now this to deal with
I’m going to contact Social worker to discuss
need a hand hold here

Hi. That's a shock. Sadly things like genetic deletion can explain why our children's birth families have struggled, perhaps over several generations.

My girls have a genetic chromosome deletion too. They were tested at our local genetics clinic and then we asked birth mother, via social services, to be tested, and she agreed. She tested negative so we surmised it came from birth father - he wasnt contactable so we never pursued it with him.

It explains my elder daughter's learning disability. She will hopefully never have children - for one thing she is on epilepsy drugs which are only prescribed if you agree not to get pregnant. But also she could never cope with a baby.

It is more complicated for my other daughter. At first she was told she could have genetic embryo screening if she wanted to get pregnant, but then they changed their mind on the importance of the deletion and said it wasn't a huge risk factor after all.

I think you probably have to follow this up tbh. It would be a problem if you don't and she connects with bm in the future and she tells her.

Hi unflappy, yes I can absolutely see that would be a shock and of course sets the mind wondering about possible futures, struggles, tests etc. for your daughter.

I'm glad that BM felt able to write to tell you, especially after no letters for over a decade.

The peadiatrician for LAC in our local hospital routinely screens all LAC/PLAC for chromosonal disorders as he has found the incidence so high, and often undiagnosed needs has been part of the complicated hisory within birth families that may have contributed to harm/risk/children being removed.

The good thing is that if you DD does has a chomosonal deletion, then having a diagnosis can be really helpful, espcially for advocating for things like EHCPs, exam additional support, school support etc. Services find it easier when there is a concrete diagnosis to latch on to.

It is very thoughtful and responsible of your daughter's bm to share this information with you.

Could your daughter possibly see this as a positive? My daughter was relieved when she got her ADHD diagnosis, because it explained so many of her problems. She could research ADHD and understand herself better and tell others that her behaviours were caused by her ADHD. She felt things were no longer "her fault". I am currently wondering if an autism diagnosis would be helpful for my daughter.

Could knowing that she has overeating be helpful - maybe not now and throughout the teenage years, but longterm?

My children have a lot of diagnosis and they have always seen it as a positive, because at least they know why they struggle so much.